“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

I didn’t believe in miracles until Isaac and Molly. I’m not sure quite when I started to believe. Their conception was a probably a miracle. Their births were miracles, even though it didn’t seem so at the time. Their survival — absolutely miracles. But the true miracles are these two amazing human beings.

Each day, when I look that them, I remember that day—26 years ago today—when they were born. When I have a crap day, when the world around me is falling to pieces, when I lose faith, when the things I know in my heart to be true are being trampled on an hourly basis, when I need a miracle to get through this day, I remember that day. And I believe.

I know how lucky we are. Statistics vary, but even today, the survival rate for babies born at 24 weeks gestation (considered micro preemies) runs between 66% and 80%. Back in 1991, the use of surfactant and steroids for lung development was cutting edge. I consider the science behind those interventions miracles. Don’t misunderstand me. Science saved my babies. The doctors, nurses, respiratory therapists, pharmacists, phlebotomists, researchers—and those who came before them and trained them—saved my babies. Science is miraculous.

As always on this day—November 17—we celebrate Isaac and Molly’s birthday along with World Prematurity Day and Prematurity Awareness Month. If you are so moved, donations to these worthy causes are always appreciated. Go purple in support of the cause. Spread the word using the hashtags #worldprematurityday and #givethemtomorrow.

If you want to know how Ike and Molly are doing, the answer is great. They are forging ahead and building their adult lives. After years and years of me having to explain the details of their complicated births and early years, they now get the “pleasure” of having to spell it all out on every job application and health form. As Molly said: “Adulting sucks.” So glad they’ve been given the chance to realize that for themselves.

Excuse my language, but Holy Crap*, how did this happen?! Twenty five. 25!Twenty-freaking-five!

(Please note that the birthday people in question are both sleeping now because they have jobs—yay!—to go to in the morning, so I will post a birthday pic when they come home for dinner. Edited at 11:09 pm to include picture above.)

Cause for celebration, indeed. Before I start, let me remind you that in one of the world’s greatest examples of serendipity, Isaac and Molly’s birthday happily coincides with World Prematurity Day.

“World Prematurity Day on November 17 raises awareness of this serious health crisis. This is a critical moment in our fight. In 2016, the nation’s preterm birth rate worsened for the first time in eight years.”— March of Dimes

If you’re looking for a good cause to support, you can celebrate our preemies’ birthday by donating to the March of Dimes.

If they’re paying attention, most parents recognize that we learn far more from our kids than they ever learn from us (don’t worry; they’re not reading this). I have learned so much from each of my children, but we’re talking about Isaac and Molly here. They are both shining examples to me in many ways.

From Isaac, I have learned patience, grace, kindness, and purity of spirit.

From Molly, I have learned tenacity, fortitude, passion, and gumption.

I freely admit that I’m not always (read rarely) as good at practicing what they have taught me as I am at recognizing it, so I thank them for their gifts, and apologize for not being better at adopting them.

While not sleeping this week, I have thought a lot about the lessons I’ve learned while raising preemies for 25 years. In particular, I’ve been thinking about privilege—trying to understand it, trying to accept that (through no effort on my part) I and my family have been afforded privileges that we don’t even recognize. It’s hard to understand something, let alone affect change, when you don’t even recognize it. So here’s what raising extremely premature babies has taught me about my privilege:

Though my husband lost his job two months before Isaac and Molly were born, we had amazing health insurance. We were able to keep it partly because my husband fought for it when he lost his job, and partly because the Employee Retirement Income Security Act of 1974 (ERISA) [a federal law] includes the COBRA amendment, which allows some employees and their families to continue health coverage for a limited time after a job loss (at their own expense). I do not know what we would have done without that excellent insurance coverage, which is no longer even available. It still took us years to pay off our portions of their NICU stay and follow up care. I am grateful today for the Affordable Care Act, which allows my family to have health insurance and has allowed us to keep Isaac insured because his part-time job does not offer that benefit.

We are privileged to live in a community with one of the premier Neonatal Intensive Care Units in the world, the Infant Special Care Unit at Evanston Hospital. At the time, we lived just a few miles from the hospital and were able to visit any time we wanted, day or night. There were families who lived 25, 50, even 100 miles away, who had other children at home, or who had to overcome other obstacles to visiting their preemies. The more than 120 professionals who cared for Isaac and Molly during their 5-month ISCU stay were literally life savers, but how much harder would it have been if we couldn’t be there for our babies.

Both Isaac and Molly received myriad therapies between birth and kindergarten. Isaac was a special needs student throughout his school career, and we are privileged to have the Individuals with Disabilities Education Act (IDEA) to support us in our efforts to get and keep the services he needed.

We are privileged because our children grew from 1.5 pounds each to become healthy children and now young adults. Many, many families with preemies are not as lucky as we have been. My heart is with them.

There are so many people who helped us along the way. I know we are lucky. Everyone we met was willing to fight for Isaac and Molly—to go above and beyond to keep them safe and healthy, no questions asked. Not every family has that privilege. I have tried to give back, and will continue to try in honor of these extraordinary young people, as well as for those who don’t have the resources we have had.

We had occasion to tell Isaac and Molly’s birth story at a party recently, and one of the people listening said: “OMG, that’s just terrible.” I’ve heard that a lot over the years, and it always takes me aback. I honestly don’t remember any part of it being terrible.

I do remember suddenly being thrown into a world that seemed terrifying and unfamiliar. It was certainly not what we had hoped for or planned. We were scared, overwhelmed, and completely unsure of what the future would bring.

We had no idea what to do, and we knew for absolute certain that we were going to face years of as-yet unimagined difficulties. But we learned immediately that we had to get busy educating ourselves, being proactive, and working hard on their behalf. We also knew that we couldn’t give up. That was not an option. Because we loved them. Because they were ours. Because it was our responsibility.

Each November during prematurity awareness month, these feelings come crashing back in on me. This November—more than any November since 1991—those feelings of fear and uncertainty have again overwhelmed me. So again, I’m looking to the lessons my preemies have taught me. I am remembering that we must get busy educating ourselves, being proactive, and working hard on behalf of those most vulnerable. We can’t give up. That is not an option. Because we love this country. Because it is ours. Because this is our responsibility.

And now my preemies, who fought so hard for life, are in this fight, too.

Happy, happy birthday, Isaac and Molly. You are my heroes. I love you more each day.

Another birthday. They say your “golden” birthday is when you turn the age of the day of your birth, so technically Isaac and Molly celebrated that golden birthday seven years ago. But this one seems more golden or magical or full circle somehow. My 24-weekers are 24 years old. How did that happen?!?

Ok. I know how it happened. I blinked.

Today was a rather low-key day. We’re having our official celebration tomorrow because Ike had to work tonight (at his new job—note the almost put together tux). Don’t worry, they got a couple of little treats throughout the day, but the presents will come tomorrow, when almost everyone will be around, except the college boy. If you had asked me 24 years ago if a MikeAndOllie birthday (or any day) would be low key, I wouldn’t have believed it.

I didn’t believe much that day, which was anything but low key. I’d been in the hospital for 11 days, trying to stave off labor with mind-warping tocolytic drugs. We thought I had settled in for the long haul, though that was wishful thinking. Isaac’s amniotic sac had ruptured and, in most cases, that results in delivery within a week. My contractions had started up again that Sunday, but I ignored them as much as possible, wishing them away, trying desperately to believe there could be power in denial.

Isaac shoved his way into the world—bruised, bloody, and not breathing—at 7:01 p.m. Initial APGAR score—0 out of 10. Our family lore has it that he convinced Molly to follow 28 minutes later, and that that was the last time he has ever won an argument with her.

Family lore aside, I remember each and every minute of that day while I was conscious. The thing is, I wasn’t conscious the whole time. After Ike was born, my labor shut down completely. Kenn thought it would be a great idea to “leave the other baby in there to cook a little longer.” My medical team disagreed, saying we would assuredly lose the pregnancy and possibly my uterus. They knocked me out for a possible emergency c-section that was avoided. I’m glad I wasn’t awake for those particular details.

When I woke again in the recovery room, I learned that Molly had joined her “big” brother at 7:29. Kenn wanted me to go up to the ISCU to see them as soon as possible, just in case they didn’t make it through the night. Unfortunately, I went into shock, complete with vomiting and the shakes from head to toe. More drugs and I was gone for 12 hours of delirious nightmares. I didn’t get to meet my daughter until the next day.

So it seems somehow appropriate that we are celebrating on the day after their birthday this year, since their actual birth day was not celebratory.

In some ways, 24 years is a long time ago in terms of the care of extremely premature infants. Isaac and Molly are two of the oldest surviving 24-weekers. Those 11 days I spent in the hospital increased their chance of survival approximately 2-3% each day. In other ways, not a lot has changed for 24-weekers in all that time; it’s still a frightening and precarious way to begin life. According to the March of Dimes, 50-60% of babies born at 24 weeks survive—daunting odds. Some studies indicate that as many as 54% of surviving 24-weekers develop moderate to severe developmental disabilities.

I also write to remind everyone that, in addition to being Isaac and Molly’s birthday, November 17 is World Prematurity Day. More than 15 million babies are born prematurely every year. If you want to help us celebrate, consider helping the effort to prevent prematurity worldwide. The March of Dimes is a good place to learn more.

Happy birthday, Ike and Molly. You (and your brothers) are still the best birth day presents I can imagine.

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I just learned about this cool program for preemie families from a post on AnnyWorld.

“Will’s Way devotes money and energy to supporting families with babies in the NICU. As Britt put it: “We try to give parents one moment to feel normal.” Will’s Way accomplishes that by providing “milestone meals” to parents, such as when a baby reaches a goal weight, or gets off oxygen, dinner at a local restaurant to get them out of the hospital, and in one case, threw a wedding dinner for a couple who got married while their baby was still in the NICU.”

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Twenty-three years ago today was our last day on the NICU at Evanston Hospital after more than fives months. While I can’t remember much about the last week of my life, I remember almost everything about those long days long ago. I know full well that without the expertise of their excellent caregivers, Isaac and Molly would not be here today. But I knew even then that those caregivers were taking care of Kenn and me (especially me) even as they cared for our children.

I’ve been fortunate enough to stay in touch with many of those caregivers, and even more fortunate to have developed a 23-year friendship with one of our primary care nurses, Jill Miller Wilke. Jill quite literally saved my life when we were on the unit—finding answers for me when she didn’t have them herself, offering support and comfort, crying with me, making me laugh, and fighting tenaciously for my babies. She has gone on to have an extraordinary career beyond her 15 years as a NICU nurse. She has worked on the PICU (pediatric intensive care unit), as an emergency room nurse, a sexual assault nurse, and an organ/tissue donation liaison. Jill is now the lead educator for Bereavement Services, developing and presenting training programs for medical professionals and support personnel.

The other day, she texted me to let me know that she had written a guest post at Preemie Babies 101. While she generously credits me for having inspired the post, I can tell you this is 100% Jill, still taking care of people better than anyone I knew. Preemie moms (really, all moms), should read her post and take her words to heart. Thank you, Jill, for this and all you do.

The month of February is full of roses, dinner dates, love letters, champagne, and sugary delights in heart shaped boxes… Not exactly the things that a mom in the NICU—sitting in a rocking chair, watching numbers on a monitor, praying her baby will be OK—is experiencing.

It’s not uncommon for a NICU mom to feel isolated and alone. Most people don’t understand what it’s like to sit, day after day, waiting patiently for a glimpse of little eyes opening, for the opportunity to snuggle, for a chance to be a parent and feel loved. As a NICU nurse for 15 years, I have heard mothers blame themselves, beat themselves up, and diminish their role as a parent, but I’m here to tell you: you are a hero. (read more)

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Today, we celebrate World Prematurity Day. Not that prematurity is anything worth celebrating. It’s not, but it is worth celebrating the opportunity to raise awareness about the causes of, consequences of, and potential ways to prevent prematurity. I can’t offer you anything as catchy as the ALS Ice Bucket Challenge, but I can show you two incredibly cute spokespeople for the cause of prematurity awareness in the form of Isaac and Molly, who (coincidentally or not) happen to share their birthday with World Prematurity Day (click the link to like the Facebook Page and learn more).

Today, Ike and Molly turn 23 years old. It’s shocking to me in many ways, but particularly when I realize how deeply etched those NICU (ISCU) days are in my brain. I doubt I’ll ever forget a moment of them, or the hundreds of people who have helped them on their journey. We are are so grateful.

Here’s a little update on how they’re doing. None if this is by way of bragging, as all their accomplishments are their own. I share these triumphs to remind us of how lucky we are. I also remember being on the NICU and being utterly unable to imagine a “normal”, happy, healthy life for those tiny babies. By any definition of the word, Isaac and Molly are true miracles. Most people are never lucky enough to experience one miracle in their lives. I’ve had more than my fair share, and Ike and Molly are two of them.

In the past year, Isaac has moved on from his long-time support system at the transition house associated with his high school. He has a job. He commutes everywhere on his own, rain or shine, by public transportation. He wields his iPhone like the true technological weapon it is, and has an app for almost everything, including how to track his bus. He has held his current job for more than a year and a half, and by all accounts is doing well at it. We are so proud.

This spring, Molly graduated Magna Cum Laude from Mt. Holyoke College, and is now studying at University College London. She is working toward a master’s degree in forensic anthropology and bioarcheology. From what I can tell, she is taking London by storm (also navigating the public transportation system) and has vowed to say “yes” to as many things as possible during this amazing year of opportunities. If you’re interested, you can follow her adventures on her own blog, English Atlas. I guarantee you’ll learn a thing or two. We are so proud.

Not bad for a couple of pound-and-a-half preemies. Thanks to everyone who helped us hope for them. I literally could not have imagined how big their lives would be.

(The picture above was taken two months ago at my birthday celebration.)

Happy birthday! Celebrate with us by telling someone about Prematurity Awareness Day.

November is a big month around here. It is Prematurity Awareness Month® (read more about it here), and mid month, November 17, is Ike and Molly’s birthday and World Prematurity Day (that’s not a coincidence, it couldn’t possibly be). This year, I’ve decided to share a piece I wrote about when Isaac was terribly sick during his NICU stay.

Originally published in the anthology Overcoming, “Just Breathe” includes parts of the journal entries I wrote at the time (which are published on this blog), and some reflection on how Ike’s catastrophic illness affected me and all the people who have known and loved him (and even some who don’t know him). I hope it will be part of a memoir I’m writing about our prematurity experience. For all the journal entries, scroll back to the beginning of the blog to follow Ike and Molly’s journey on the NICU (or ISCU, as it was known to us). As always, this is dedicated to the hundreds of people who helped us along the way, and to preemie families everywhere.

Just Breathe

Day 50

Good things, Ike. You gained more weight last night. Dr. H. was really impressed by how big you have gotten. He thinks we should get you a flannel shirt, like Daddy’s. You still need a lot of oxygen, but overall you are doing well. I thought as you started to get better, things would be easier for me, but I’m more anxious than ever. Waiting for you is so hard. But you’re worth it, big guy. Just 28 grams until you reach your birth weight.

Fifty days after my twins were born, my son Isaac had still not regained his birth weight of 685 grams. To put that in perspective, 454 grams equals one pound. Born 16 weeks early, he was too small to have to fight as hard as he did, but by day 50, we had settled into a new normal, where small was big, hospital was home, and hope seemed to be working. Now it was just a matter growing them big enough to bring home.

That’s what we thought, but just two hours after my promising visit on day 50, the phone rang. When you have a sick baby in the hospital, the ring of a telephone is an alarm bell heralding disaster, but I had let down my guard.

I don’t remember the words of that phone call, only the urgency. I do remember trying to find care for my stepchildren, who were visiting. I remember feeling terrible that our plans for my stepdaughter’s already-belated birthday celebration were being scuttled. I remember focusing on those practicalities because I didn’t want to focus on the scary things going on at the hospital. And I remember realizing, maybe for the first time, that you can’t quit the job of being a parent.

Day 51

My dearest Isaac, my sweet boy. What you have been through in the last 22 hours! Yesterday morning you were doing well. Two hours later, you were back on the ventilator. Daddy and I spent the night to be near you. You’re on all kinds of medicine, with so many tubes and lines sticking out of your beautiful little body. I love you so much, Isaac. I hope you can sense that. I’d do anything to help you through this, but it is something you have to do yourself. Be strong. Life is worth it. There’s a place in my heart—Isaac’s place—that no one else can fill. I promise life is better than what you have known so far. Just be your feisty self and keep fighting. Stick your tongue out at the world and prove the odds wrong. I love you. I love you.

Isaac blew up like a water balloon, the edema nearly doubling his weight. Doctors, nurses and respiratory therapists crowded around his bed. His primary care nurse cried during the six hours it took her to write up the notes from her shift, and we stood by, shocked, helpless, and barely able to breathe.

Bad things always seem to happen on weekends. That terrible Saturday night, the doctor on call was a floater—she didn’t know us or our babies. At about 10:30, she sat down with us and said the words we had heard many times before: “The next 12 hours are critical.” She listed everything that was going wrong with our boy. She looked compassionate, but somehow resigned. She tried to hold my hand, but I wouldn’t let her.

Kenn kept interrupting, saying things like “But he’s going to be OK, right?” and “Yeah, but he’s overcome stuff like this before.” The doctor repeated: “He’s critical.” I heard what she was saying. I took Kenn’s face in my hands and made him look at me. “She’s telling us that he’s probably going to die tonight.” He half shook his head, looked back at the doctor, who looked down at her hands, and then he completely deflated. “The next 12 hours are critical.”

Every night after the babies were born, before we fell asleep, I asked Kenn if they were going to be okay. He always said: “They’re going to be fine. They’re going to grow up and have happy, healthy lives.” I never really believed him, but it helped to hear the words. That night, as we stood over Isaac, he stared back at us through swollen eyelids, seeming to see right into my doubting heart. Kenn squeezed my hand and said: “See, he’s going to be fine.”

Isaac didn’t die that night, but he continued to get sicker and sicker. His lungs filled with thick mucus and he had regular episodes where his heart stopped and he couldn’t breathe. Dr. Abby Adams, the neonatologist who had taken care of the babies the night they were born, was also on call on day 56.

Day 57

Oh, boy, did you have a rough time last night, Ike. Dr. Adams rushed to the hospital (she even got stopped by a policeman for speeding) and I called Daddy and we all worried over you until about 3:00 in the morning. Dr. Adams decided to give you some medicine that they give to kids with Cystic Fibrosis. She said it had less than a 50 percent chance of working, but it seemed to help.

The medication Dr. Adams decided to try that night had only been tried on three other preemies and had worked on only one. Isaac was patient number four. I remember her talking to him as she flew around the room. “I’m trying, Ike, I’m trying. We’ll figure this out.” That’s when I broke down completely.

She knelt in front of me and took my hands. “He’s still here,” she said to me. “He’s on paralytic medication, but his eyes are following my every move. He’s still here, and as long as he keeps fighting, I’ll keep fighting too.”

It sounds melodramatic, I know, and it was. But she was right. You could feel Isaac watching you, and his strength never seemed to waiver. If he wasn’t giving up, and she wasn’t giving up, what choice did I have except to fight right along with them?

The hours and days dragged on, and Ike seemed stuck in an endless cycle. They would suction him to clear his lungs, but more mucus would build up. His tiny veins were collapsing from all the IVs and they had to shave his head for more access. Still swollen, his toes looked like overripe peas ready to pop off his feet.

It sounds funny, but our greatest prayers at that time were for him to pee, because that meant his kidneys were still working. We’d watch and wait and beg him to pee. “Come on, Ike, pee for Mama. You can do it. Just a few drops, that’s all we need.” I had never understood before how elemental life really is: breathing, peeing, sleeping. Those are the things that matter. Later, eating, drinking, and pooping become important too. The rest is merely diversion.

By day 73, Isaac was overcoming the infection. His swelling abated, and he was starting to gain real weight again, not just fluid weight. I couldn’t believe someone so small could be so resilient. Strangers stopped by to congratulate him—first, nurses and doctors from other parts of the NICU would give him the thumbs up, but soon news of his heroic recovery spread and we got visitors from all over the hospital. One custodian from the cardiac unit stopped by: “You the man, Ike. One tough little dude. Way to go, buddy.”

Day 75

You couldn’t wait, could you, Isaac? You went ahead and pulled out your breathing tube last night. And you are doing great! And guess what? I got to hold you today. It was wonderful. You are so tiny and warm and beautiful. I love to look at your little mouth. You have such an expressive face. You raise your eyebrows, or scrunch your forehead, or open your eyes really wide and look right into me.

They pulled the last vestige of Ike’s devastating illness, a special catheter, on day 86. The doctors had sworn to me that they weren’t going to remove it until he left for college—just in case—but Isaac had other ideas. It was almost seven more weeks before he finally came home with us, on day 132, weighing 3 pounds, 14 ounces, huge in our eyes.

While his illness had been conquered by the world’s smallest superhero, Ike would continue to fight to overcome the ramifications of his extreme prematurity for many years to come. He has approached each new therapy with joy, and confounded every naysayer who has ever doubted him. Some days, I’m completely calm, knowing that he will figure things out in his own Isaac time, in his own Isaac way. Other days, I panic and start to hyperventilate, sick with worry about him and his future. It’s on those days that I remember the first and most important lesson he taught me: just breathe.

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Look How We’ve Grown

The pictures in the banner at the top of this blog are Isaac shortly after birth (l), Ike and Molly in 2010 (c), and Molly shortly after birth (that's her dad's wedding ring dangling on her arm, just to put things in perspective).